Lori,
The most significant piece of info is this, "He has a very difficult time
breathing  at all times, not just during feeds."
Therefore, for the time being, and until a diagnosis can be made, or figure
out exactly what the anatomical challenges are, I would recommend skin to
skin holding, kangaroo care as much as possible. If baby leads self to
attaching, I would let him and see what he can do. If he can comfortably
suck a pacifier and still breathe well, then I would consider this as an
exercise or form of physical therapy. I am not sure what type of pacifier
would be useful, perhaps someone who has read Cathy Genna's book, Supporting
Sucking Skills, would have this info.
It goes without saying, that mother should be encouraged and supported to
establish and maintain milk production for this baby.
Laurie Wheeler RN MN IBCLC
Mississippi USA

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